LANSING – The Michigan Chapter of the American Academy of Pediatrics on Monday gathered to urge Congress to refrain from repealing the Patient Protection and Affordable Care Act unless an alternative plan with the similar protections is established, Dr. Sharon Swindell, the president-elect of the Michigan chapter and a pediatrician in Ypsilanti, said 600,000 Michigan residents have insurance now that did not before the ACA.

“A lot of those are adults, but in the pediatric world, we strongly believe that when adults are covered and have access to care, children have better coverage and access to care,” she said.

She also said 96 percent of children are insured, which is an all-time high in the state, and 70,000 children and young adults are covered under their parent’s health insurance.

Dr. David Dickens, who treats primarily cancer patients in Grand Rapids, said there are multiple protections in the law that are important for children with cancer in having access to care and having more options if their condition is not curable.

Dickens said families deserve the best treatment when their child is diagnosed with cancer, and the main tool used is clinical trials. Under the ACA, coverage for clinical trials is guaranteed, he said. While not all patients will be approved for a clinical trial, there is an appeals process under the ACA if they are denied, he said.

“In a world without the Affordable Care Act, if the insurance company decides to deny therapy for a child with cancer, there won’t be anything a patient or physician can do about it,” he said. “The physical and financial cost of curing cancer is tremendous, and there is a lifetime of medical conditions many patients have. If preexisting conditions and lifetime caps are not addressed in any type of replacement plan, those children will not have access to medical care in their future.”

And he said for child cancer patients who are treatable, their families do not have to choose between pursuing clinical trials and hospice care under the ACA. If it is repealed, families will have to choose.

“Those families will watch their child die in the hospital will more pain, less comfort and less dignity,” Dickens said.

Swindell said the act is not perfect but it does provide many benefits, and if it is repealed, there should be something there to replace it so progress is not turned back.

“Simply put, the health of children is not a partisan issue. The health of children is really the foundation for healthy and protective adults,” she said.

Dickens said when he discusses the ACA, he urges people not to call it Obamacare. He said people generally believe the law has a political origin and isn’t good based on its name.

“I tell people there are protections in there which are bipartisan, and if the Affordable Care Act gets repealed, then the protections will be lost for people who believe whatever political belief they have,” he said.

In terms of rate increases, Dickens said correlation does not equal causation.

Tom and Amanda Ruddy, who had a son that passed away from a rare brain tumor known as DIPG, also spoke at the press conference. Mr. Ruddy said he did not know much about the ACA when his son got sick but he learned about its benefits during the time he was seeking treatment for his son.

He said it was “imperative” to be able to use hospice care while still receiving treatment so he and his wife could bring their son home. Mr. Ruddy urged “responsible decision-making” when it comes to ACA changes.

Ruddy said removing her son from the hospital when he was getting sicker was better for his mindset.

“We went home to get stronger and to get Thomas to a clinical trial,” she said. Ruddy said she and her husband are raising money and awareness. She worries if the ACA is repealed their efforts will be meaningless.

“From a parent’s standpoint, I would hate to see another family to have to choose between the two therapies,” she said.

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